Other Possibilities Other Than Celiac Disease.

[ggroth9]

I have had a frustrating time getting to the root of my ailments, and was wondering if anyone out there might have some ideas that could shed some light on my problems. I am a 37 year old male, and currently on a gluten-free diet. My problems date back to when I was a teenager when I started suffering from arthritis in my hips and knees. These symptoms were written off as growing pains at the time, and are currently being attributed to old age by my GP. I also have elevated liver enzymes, and have been questioned by more than one doctor as to how much alcohol I drink. My blood sugar is erratic at best regularly in the range of 40-200. My bowel movements range from extreme constipation to explosive. My mother has been diagnosed with lupus (she has been sick with this disease for the past 25 years, and received this diagnosis 10 years ago).

While searching for an answer, a friend suggested celiac disease. This was never addressed by my GP, probably because I do not suffer from weight loss. Quite the opposite, I am a good 40 pounds overweight at this moment. Anyway, after I did some reading, I decided to try the gluten-free diet. The change was almost instaneous. In two days I was a completely different person. The tendonitis in my arm disappeared, the chronic pain in my right shoulder disappeared, the chronic lower back pain disappeared, as well as the arthritis in my knees and hips. I found I no longer had any problems with my blood sugar, and my liver enzymes returned to normal. My sleep habits changed from me being a night owl to becoming a morning person. For the first time that I could remember, I awoke in the morning feeling like I felt good.

Last December, a GI specialist wanted to check me for celiac disease. Previous blood tests came back negative, so she wanted to do an upper GI -oscopy. I went off the diet for a month, and the results again came back negative. I ended up staying off the diet until just recently. Last month I decided to attempt to quit smoking again, and was fairly successful for about a month. At the end of the month, instead of gradually feeling better, I started feeling physically worse. The arthritis set in to the point where I could only sleep about 2 hours at a time. Unfortunately I resumed smoking, and the symptoms disapeared in a couple of days. So I went back on the gluten-free diet, and find that once again I'm feeling much better.

Now for the question, any ideas on what I might be dealing with? The GI specialist suggested a link between smoking and Crohn's, apparently nicotine helps matters. I was scheduled to go in for an -oscopy of the other end, but cancelled the appointment. I found this specialist to be somewhat of a crackpot when she kept insisting I had diarrhea when I didn't (long story). I have been to see rheumatoid specialists and endocrinologists that all end up finding something weird in some of my blood tests, but nothing is ever conclusive, and they end up telling me to quit smoking and send me on my way.

Although I'm feeling much better on the gluten-free diet, and am guessing that I have some type of gluten allergy, I would like to obtain an official diagnosis for tax purposes. It's my understanding that any extra money outlaid due to the requirements of a medically necessary diet can be written off. It's not much, but considering that gluten-free bread is 6-7 times the price of a normal loaf of bread, every little bit helps.

TIA

Greg Groth

[tarnalberry]

Blood tests and biopsies are highly likely to give false negatives if you haven't been eating significant quantities of gluten every day for three months. So you'd have to go back on that for testing. Some doctors will only give a formal diagnosis with biopsy results, and then you depend upon the samples being taken in the right place and the person reading the slides to not diagnose only based on total villi destruction.

Getting a "formal" diagnosis may or may not be worth it. Not only can it negatively affect you if you ever need to find private medical insurance (something that's not an automatically guaranteed group plan from an employer, for instance), it can affect your ability to get reasonably priced life insurance. Additionally, the tax write off may or may not be worth it. Aside from the fact that the IRS may phase it out completely (and not all accountants have been consistent in thinking it was truely a tax deduction), it can raise your odds for getting audited. Additionally, in order to take the deduction in the first place, you have to be itemizing your medical expenses, which means that you have to be spending at least 7.5% of your AGI on deductable medical expenses.

[CMCM]

I have had a frustrating time getting to the root of my ailments, and was wondering if anyone out there might have some ideas that could shed some light on my problems. I am a 37 year old male, and currently on a gluten-free diet. My problems date back to when I was a teenager when I started suffering from arthritis in my hips and knees. These symptoms were written off as growing pains at the time, and are currently being attributed to old age by my GP. I also have elevated liver enzymes, and have been questioned by more than one doctor as to how much alcohol I drink. My blood sugar is erratic at best regularly in the range of 40-200. My bowel movements range from extreme constipation to explosive. My mother has been diagnosed with lupus (she has been sick with this disease for the past 25 years, and received this diagnosis 10 years ago).

While searching for an answer, a friend suggested celiac disease. This was never addressed by my GP, probably because I do not suffer from weight loss. Quite the opposite, I am a good 40 pounds overweight at this moment. Anyway, after I did some reading, I decided to try the gluten-free diet. The change was almost instaneous. In two days I was a completely different person. The tendonitis in my arm disappeared, the chronic pain in my right shoulder disappeared, the chronic lower back pain disappeared, as well as the arthritis in my knees and hips. I found I no longer had any problems with my blood sugar, and my liver enzymes returned to normal. My sleep habits changed from me being a night owl to becoming a morning person. For the first time that I could remember, I awoke in the morning feeling like I felt good.

Last December, a GI specialist wanted to check me for celiac disease. Previous blood tests came back negative, so she wanted to do an upper GI -oscopy. I went off the diet for a month, and the results again came back negative. I ended up staying off the diet until just recently. Last month I decided to attempt to quit smoking again, and was fairly successful for about a month. At the end of the month, instead of gradually feeling better, I started feeling physically worse. The arthritis set in to the point where I could only sleep about 2 hours at a time. Unfortunately I resumed smoking, and the symptoms disapeared in a couple of days. So I went back on the gluten-free diet, and find that once again I'm feeling much better.

Now for the question, any ideas on what I might be dealing with? The GI specialist suggested a link between smoking and Crohn's, apparently nicotine helps matters. I was scheduled to go in for an -oscopy of the other end, but cancelled the appointment. I found this specialist to be somewhat of a crackpot when she kept insisting I had diarrhea when I didn't (long story). I have been to see rheumatoid specialists and endocrinologists that all end up finding something weird in some of my blood tests, but nothing is ever conclusive, and they end up telling me to quit smoking and send me on my way.

Although I'm feeling much better on the gluten-free diet, and am guessing that I have some type of gluten allergy, I would like to obtain an official diagnosis for tax purposes. It's my understanding that any extra money outlaid due to the requirements of a medically necessary diet can be written off. It's not much, but considering that gluten-free bread is 6-7 times the price of a normal loaf of bread, every little bit helps.

TIA

Greg Groth

Greg....with such wonderful improvements on a gluten free diet, why on earth not stay with it? The fact is, most doctors know little to nothing about celiac disease, and therefore don't tend to look that way in a diagnosis. The results of your diet tell you a lot. I'd suggest that you get some books on celiac...Dangerous Grains is a great one....go to amazon and enter a search for celiac disease and several will come up. I've got another great one..."Against the Grain" or something like that. Then you might want to get some testing done via Enterolab, which in my case seemed a lot cheaper and more interesting than just banging my head against the wall and draining my wallet with clueless doctors. You probably need to be your own advocate in this. Knowledge is everything! Read a few books and you'll then know a zillion times more about celiac disease than your doctors know!

Carole

[Carriefaith]

If you don't feel like going back on gluten for 3 months, maybe try getting a celiac gene test? From your history I would guess that you have celiac disease or a gluten intolerance.

[Guest cainepole]

A close friend of mine has crohns and his intestines tie themselves into knots that have to be surgically removed, we're talking total blockage of the intestines. Crohns is an infection in the intestines and they attack it relentlessly, or so he has been told by his GI doc. Symptoms are close as in pain and bowel problems, but it does not go away with a gluten-free diet. His reactions are milder for longer on gluten-free but always end up with him having the infected area removed. His last surgery the surgeon removed more than the infected area and now over a year later he is still doing fine (not on a gluten-free diet). This is the longest he has been out of the hospital in 6yrs. The previous 5 he only worked 3 or 4 months out of each year and not in a row. If his case is typical I think you can rule out crohns as a possibilty. If anyone has a different case history they know about, I would like to hear it. More knowledge can lead to a better life for him hopefully. Good luck with your diet and quiting the coffin nails. The diet is 10 times easier than giving up that sweet sweet nicotine. Puff, puff, Joe Camel is still cool even if he is illegal. Those marketing guys sure know what they are doing!

[mommida]

I have read some articles that say cigarette smoking also has an effect on Celiac disease. Smoking tends to lessen some of the symptoms and/or the symptoms started after the person quit smoking.

[danikali]

I have read some articles that say cigarette smoking also has an effect on Celiac disease. Smoking tends to lessen some of the symptoms and/or the symptoms started after the person quit smoking.

That's interesting......you heard that quitting smoking can bring on more symptoms of Celiac? Did I get that right?

[nikki-uk]

Yeah,I've heard that smoking can 'protect' you in some way from inflammatory bowel diseases!

Oddly enough,my husband gave up about a year before dx

Unfortunately he's gone back to smoking-but I do wonder?......

[danikali]

Yeah,I've heard that smoking can 'protect' you in some way from inflammatory bowel diseases!

Oddly enough,my husband gave up about a year before dx

Unfortunately he's gone back to smoking-but I do wonder?......

That's really interesting because my symptoms always seem to get a little bit better when I'm smoking, and vice versa, worse when I'm not smoking again.........

Well, I'm not smoking anymore, so we'll see what happens.

[mommida]

From the way I understood the articles, yes smoking in some way was masking the symptoms.

Don't in any way think that I would ever promote smoking, but that seems to be a documented association.